Who will do what we do? Serious mental illness or disability There is no cure These conditions need to be managed There will be ups and downs Amount of involvement varies… …someone needs to be there for support.

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What is our goal? To have a quality of life for the rest of their life… …not just for the rest of our life!

Quality of Life Expectations based on their capabilities and limitations Unique to their situation “Quality of Life” = Best of what is possible. Dependent upon others, but as independent as possible.

What we do now. Provide financial assistance. Drive to appointments. Recognize time for medication change. Live with us. Provide social interactions. Do something on a daily, weekly, or monthly basis:

How to maintain that level of involvement when we’re no longer able to provide it ourselves? Someone else to do what we do! What we do now.

Hope? Can we afford NOT to plan?

What can go wrong? General funds continue to be cut Individuals “graduated” from systems May not have Case Manager in future As agencies are forced to reduce budgets, individuals could be cut from Medicaid, food stamps, and subsidized housing.

Are they capable of straightening out the problem on their own? Leave an inheritance: Money could be squandered Stolen Services could be cut because of asset limits What can go wrong?

When is the right time to start planning? NOW!

Goals for yourself What would you like to change about your present situation? Do you want to be able to enjoy a worry-free vacation? Could the atmosphere in your home be better? Do you want to have peace of mind? Write down realistic goals for yourself:

Goals for your loved one A safe place to live. Reliable and compassionate caregivers. Adequate financial resources. Good medical, dental and vision care. Write down realistic goals for your loved one:

We can’t plan for the future without an idea of what we want that future to be.

Starting your plan National Plan Alliance Workbook “Planning for the Future of a Loved One with a Developmental Disability or Mental Illness” Put it in writing! Available at:

Building your plan 1.Develop a written roadmap. 2.Identify what needs to be done and when. 3.Stipulate wishes. 4.Develop resources. 5.Identify who will oversee the plan. Skip to 24

Special Needs Trust Part of a plan! Only addresses financial and legal issues. Building your plan

Who will implement your plan? Who will handle a crisis? Who will fight for rights and well-being?

Who will implement your plan?  Siblings  Spouse  Other Relatives  Attorney  Friend  Government service organization

Who will implement your plan? 1.Who will be there to carry out your wishes? 2.Who has the competency to implement your plan? 3.Who has the knowledge and information needed?

Who will implement your plan? 1.Who will be there to carry out your wishes? Someone who is absolutely going to out-live your loved one.

Who will implement your plan? 2.Who has the competency to implement your plan?  Who knows the “system”?  Who knows how to advocate with DHS, CMH, or Social Security?  Who knows how to approach your loved one?

Who will implement your plan? 3. Who has the knowledge and information needed?  You.  ?

Can other family members have a role? Do you want them to be a brother, sister, uncle or aunt? Or Do you want them to be the one that says:  “No you can’t buy that!”  “You need to do this!” Creating an uncomfortable relationship. Who will implement your plan?

Family relationships are a critical part of your loved one’s life Spending holidays and special occasions together. Being someone for your loved one to talk to. Reaching out to them on a birthday or special events. Or just inviting them over for dinner. and need to be preserved! Who will implement your plan?

Who we needed to oversee our plans:  Had to be independent of the “system.”  Dedicated to seeing that our plan was the priority.  Experts at advocating with government agencies. Who will implement your plan?

We wanted family members to continue to be family members… …and not be burdened by having to be more than just that. Who will implement your plan? Who we needed to oversee our plans:

We knew that attorneys… …aren’t able to provide the kind of care, monitoring, and advocacy that we know is necessary. Who will implement your plan? Who we needed to oversee our plans:

National Plan Alliance  22 PLAN organizations in 18 states  (Planned Lifetime Assistance Networks)  Designed to provide what we are looking for.  Don’t replace public services.  Do replace what is left for us as families to provide.

 Independent  Governed by a local board  501 (c) (3), non-profit corporations They continue to provide services beyond the “life” of any one person. They help ensure “quality of life” for the rest of our loved one’s lives. National Plan Alliance

What can a PLAN organization do?  Manage financial assistance  Monitor medication compliance  Schedule appointments  Help with Social Service disputes  Assist with transportation issues  Report to family members PLAN can help you create your Plan of Care. PLAN can provide lists of qualified experts.

Have they ever lived independently? Do you have a written housing plan… and when will it be implemented? When would you like to start working on a plan? Does your family member live independently? If no:

Does your family member manage their own money? Will their inheritance jeopardize their public benefits? Will your family member be able to invest this money on their own? Is there a Special Needs Trust in place? When do you want to start working on a trust document? Will your family member receive any inheritance? If yes:

What will the PLAN program cost? This Individualized Care Plan will spell out what you want the PLAN Director and staff to provide on a daily, weekly and monthly basis.  What services need to be provided  What items need to be monitored Onetime fee of $750 to develop your Individualized Plan of Care

Hourly rates = $60–$100 for services Director will work with you to determine whether funds are sufficient. What will the PLAN program cost?

If your loved one needs medication:  PLAN would remind your loved one to get the blood test  Follow through with the pharmacy  If not ready…take appropriate steps Cost: ¼ hr = $25 (Assuming $100/hr.) What will the PLAN program cost?

Loved one dropped from Medicaid:  PLAN would contact Medicaid  Identify issue and take corrective action Cost: 2 hours = $200 (Assuming $100/hr.) What will the PLAN program cost?

 Registered as Michigan Corporation  Granted IRS non-profit status  Held two successful fund-raisers  Consulted with three PLAN Executive Directors PLAN of Southeast Michigan

What would have been impossible to do individually… …we have accomplished by working together. PLAN of Southeast Michigan

If you would like to see this organization become operational… …we need your help! PLAN of Southeast Michigan

 Approach foundations, agencies, corporations, and individuals for start-up funds  Present business plan and needs analysis PLAN of Southeast Michigan

How you can help! If you might possibly utilize the services of PLAN of Southeast Michigan, we are asking you to sign a non-binding Letter of Intent. This Letter of Intent will demonstrate to potential funders that families in Southeast Michigan want the resources of PLAN of SEMI.

 Family member created and governed.  Not a service organization like community or government providers.  Operate under the guidance of family members.  Government cuts won’t affect services. PLAN of Southeast Michigan

PLAN is an imperative. PLAN of Southeast Michigan Must become operational! PLAN of Southeast Michigan

Letter of Intent PLAN of Southeast Michigan

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 Registered as Michigan Corporation  Granted IRS non-profit status  Held two successful fund-raisers  Consulted with three PLAN Executive Directors  Presented to more than 100 Easter Seals staff Accomplishments